The eighth-annual conference, “Adult Congenital Heart Disease in the 21st Century,” hosted by Children’s National Health System and MedStar Washington Hospital Center provides a comprehensive review of the evaluation, diagnosis and management of ACHD, including guidelines to help ACHD patients manage a healthy pregnancy and clinical guidance about the progression of congenital heart disease (CHD) treatment from adolescence through adulthood.

Two tracks accommodate these themes, with the first focusing on a multidisciplinary approach clinicians can use to help ACHD patients assess risks for pregnancy complications, while planning and managing a healthy pregnancy, with input from cardiologists, anesthesiologists and maternal fetal medicine specialists. The second focuses on cardiac defects, starting with anatomical cardiac lessons with 3D heart models, then moves to imaging review, examining echocardiograms and MRI’s, and ends with clinical management review.

“This conference brings the best science and the most innovative approaches to treatment with questions doctors receive in the exam room,” says Anitha John, M.D., Ph.D., the conference organizer and director of the Washington Adult Congenital Heart program at Children’s National. “We’re inviting patients to join the afternoon of the second day of the CME conference again this year to support shared knowledge of these concepts, which supports lifelong treatment and education.”

Dr. John planned this year’s conference with the November 6 ACHD board exams in mind, integrating topics that will appear on the third ACHD certification exam issued by the American Board of Internal Medicine.

At this year’s CME conference, more than a dozen faculty members, including several physicians and nurses from Children’s National, will guide lectures to help attendees meet 13 objectives, from understanding the prevalence of congenital heart disease and its complications to learning about when surgical interventions and referrals to specialists are necessary.

Attendees will review new and innovative PAH therapies, mechanical support therapies, catheter-based interventional procedures and appraise the use of pacemaker and defibrillator therapy among adults with CHD.

Patients and families attending the patient sessions, held from 12:30 to 3:45 p.m. on Saturday, October 5, have a chance to participate in three sessions that support the medical and social needs of ACHD patients. Topics range from workshops that address the neurodevelopment and psychosocial factors of living with a congenital heart defect to sessions that focus on reproductive options for patients and personalized lifestyle recommendations, including fitness and exercise guidelines.

“To support cardiovascular health throughout the lifespan, it helps to educate patients about their heart’s structure and unique needs,” notes Dr. John. “We want to spark a dialogue now and have future conversations with patients, especially while they are young.”

The American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines updated ACHD treatment recommendations in August 2018, the first time in 10 years, and many of these guidelines manifest as panel discussions and interactive lectures presented at the 2019 Adult Congenital Heart Disease in the 21st Century conference.

Attendees can receive up to 12.5 credits from the Accreditation Council for Continuing Medical Education, the Accreditation Council for Pharmacy Education, the American Nurses Credentialing Center and the American Academy of PAs.

Those interested in starting their own ACHD program can attend an evening symposium, entitled “ACHD Program Building 101,” hosted by representatives from the Mid-Atlantic ACHD Regional Group. Topics in the six-session panel range from managing ACHD patients in a pediatric hospital setting to the role of clinical nurse coordinators in ACHD care.

The Washington Adult Congenital Heart Program (WACH), part of Children’s National, earns accreditation from the Adult Congenital Heart Association for providing high-level, integrated care to patients with congenital heart disease.

Anitha John, M.D., Ph.D., a congenital heart disease (CHD) specialist and the director of the Washington Adult Congenital Heart Program (WACH) at Children’s National Health System, is a master of creating and leading multidisciplinary teams and networks to drive innovative standards to accelerate personalized treatment for adults born with heart conditions.

The Adult Congenital Heart Association (ACHA), a national organization dedicated to advancing adult congenital heart disease (ACHD) care, announces WACH as one of 19 medical centers in the country – and the first in the Mid-Atlantic region – to earn its accreditation, which signifies a center that provides high-level, comprehensive care.

WACH receives this accreditation by meeting ACHA’s criteria, which includes medical services and personnel requirements, and going through a rigorous accreditation process, both of which were developed over a number of years through a collaboration with doctors, physician assistants, nurse practitioners, nurses and ACHD patients.

There are 1.4 million adults in the U.S. living with one of many different types of congenital heart defects, ranging among simple, moderate and complex.

“There are now more adults than children in the U.S. with CHD,” said Mark Roeder, President and CEO of ACHA. “Accreditation will elevate the standard of care and have a positive impact on the futures of those living with this disease. Coordination of care is key, and this accreditation program will make care more streamlined for ACHD patients, improving their quality of life.”

A study published in Circulation examined mortality rates among 70,000 patients living with CHD over a 15-year period, from 1990 to 2005, and saw mortality rates fall with referrals to specialized ACHD care centers.

“This accreditation lets patients and other specialists know what to expect if they visit our center,” says Dr. John. “While the field of congenital heart disease is small enough to personalize, it’s large enough to standardize. I’m grateful to work with a wonderful team to provide this type of high-level care.”

Dr. John has a unique background to elevate standards of ACHD care, while creating tailored prescriptions. She is one of a handful of physicians with subspecialty training in ACHD, which she completed at the Mayo Clinic. Her formal training in internal medicine and general pediatrics, completed at Brown University, fits well with the subspecialty training she received as a pediatric cardiology fellow at Children’s Hospital of Philadelphia. Her research now focuses on clinical outcomes in congenital cardiology and advancing multicenter research efforts in adult congenital cardiology.

From March 2016 to 2018, Dr. John led the Alliance for Adult Research in Congenital Cardiology, the major multicenter research group in the U.S. focused on ACHD research. She’s also working with experts and patient advocates to guide efforts to set up a future ACHD patient registry, which will continue to guide research efforts and educate providers about ACHD care.

To help facilitate collaboration, Dr. John guides quarterly meetings of the Mid-Atlantic ACHD regional group. Established in 2011 through Children’s National, the group has expanded to include ACHD providers from over 18 programs/practices from across the East Coast. This group provides a forum for patient case discussion and programmatic support. More importantly, the professional collaboration has served to not only improve patient care but also provides support to providers as they continue to care for a growing population of patients. This type of collaboration fosters mutual understanding and sets the stage for a relaxed but collegial environment where questions flow and learning occurs.

To further facilitate education, she created an inaugural patient day at the 7th Annual Adult Congenital Heart Disease in the 21st Century conference this past year, allowing patients to have their own educational summit – while opening the opportunity to providers to stay an extra day to learn about patient-centered care. The conference relies heavily on the participation of the Mid-Atlantic ACHD regional group of providers.

Patients learned as much about 3D heart models, pacemakers and noninvasive surgical techniques as they did about personalized approaches to lifestyle care, from practicing mindfulness to hearing about communication strategies to use with their medical teams and families. A variety of experts, from cardiac surgeons to clinical social workers, led the panels and breakout sessions.

“We’re empowering patients to become an active participant and an engaged member of their medical care team,” adds Dr. John.

ACHA supports WACH’s efforts and spoke at the conference, complementing its mission to serve and support the more than one million adults with CHD, their families and the medical community.

The WACH team includes not only Dr. John, but ACHD cardiologists Seiji Ito, M.D., and Tacy Downing, M.D.; Pranava Sinha, M.D., surgical director; Rachel Steury, R.N.P., advanced practitioner; Nancy Klein, R.N., clinical coordinator; Emily Stein, M.S.W., social worker; Whitney Osborne, M.P.H., clinical research coordinator, and Ruth Phillippi, M.S., program coordinator. The team works together seamlessly to fulfill the program mission of achieving clinical excellence, promoting research and providing education in the care of adults of with CHD.

For more information about WACH or to take advantage of resources for ACHD providers, please contact 202-821-6289 or visit www.ChildrensNational.org/WACH.

In her speech titled “The Future of Congenital Heart Disease Research: Keeping the Patient-Centered Promise,” Dr. Pearson reflected on the progress of congenital heart disease research and shared powerful narratives from patient families, detailing their hopes for the future. She also unveiled what’s on the horizon, including advances in genomics research, a data commons and new approaches for rare diseases. Dr. Pearson is a cardiologist within Children’s National Heart Institute, associate director of the Division of Cardiovascular Sciences, and director of the Office of Clinical Research at the National Heart, Lung, and Blood Institute.

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